Caroline Nicholson

Searching for an Operational Definition of Frailty: A Delphi Method Based Consensus Statement. The Frailty Operative Definition-Consensus Conference Project

BACKGROUND There is no consensus regarding the definition of frailty for clinical uses. METHODS A modified Delphi process was used to attempt to achieve consensus definition. Experts were selected from different fields and organized into five Focus Groups. A questionnaire was developed and sent to experts in the area of frailty. Responses and comments were analyzed using a pre-established strategy. Statements with an agreement more than or equal to 80% were accepted. RESULTS Overall, 44% of the statements regarding the concept of frailty and 18% of the statements regarding diagnostic criteria were accepted. There was consensus on the value of screening for frailty and about the identification of six domains of frailty for inclusion in a clinical definition, but no agreement was reached concerning a specific set of clinical/laboratory biomarkers useful for diagnosis. CONCLUSIONS There is agreement on the usefulness of defining frailty in clinical settings as well as on its main dimensions. However, additional research is needed before an operative definition of frailty can be established.

The experience of living at home with frailty in old age: A psychosocial qualitative study

BACKGROUND With enhanced longevity, many people in late old age find themselves frail and living at home, often alone. Whilst conceptualisations vary, frailty is often used in clinical practice as a directional term, to refer to older people at particular risk of adverse health outcomes and to organise care. Investigation of the experience of being frail is a complementary and necessary addition to international research endeavours clearly to define, predict and measure frailty. Currently, there is little empirical work exploring how people over time manage being frail. OBJECTIVE The study aimed to understand the experience over time of home-dwelling older people deemed frail, in order to enhance the evidence base for person-centred approaches to frail elder care. DESIGN The study design combined psychosocial narrative approaches and psycho-dynamically informed observation. Data on the experience of 15 frail older people were collected by visiting them up to four times over 17 months. These data were analyzed using psychosocial analytical methods that combined case based in-depth staged analysis of narratives with psycho-dynamically informed interpretations of observational data. SETTING The study was carried out in the homes of the participants; all lived in a socio-economically diverse area of inner London. PARTICIPANTS 15 participants were purposively selected for living at home, being aged 85 or older and regarded as frail by a clinical multi-disciplinary intermediate care team. RESULTS The findings challenge the negative terms in which frailty in older age is viewed in the predominant models. Rather, frailty is understood in terms of potential capacity - a state of imbalance in which people experience accumulated losses whilst working to sustain and perhaps create new connections. CONCLUSION This study suggests that holding together loss and creativity is the ordinary, but nonetheless remarkable, experience of frail older people. For frail older people, the presence of others to engage with their stories, to recognise and value the daily rituals that anchor their experience and to facilitate creative connections is vital if they are to retain capacity and quality of life whilst being frail.

A qualitative study exploring use of the surprise question in the care of older people: perceptions of general practitioners and challenges for practice

Objective The question “Would you be surprised if this patient were to die in the next 6–12 months?” has been included in UK palliative care guidance with the aim of supporting the identification and care planning of those nearing the end of life. Little is known about how the surprise question is utilised in the care of older people within primary care. This study sought to explore the perceptions and experiences of general practitioners (GPs). Method Semistructured interviews were conducted with 12 GPs. Each interview reflected on the care of two people, aged 80 years or older, selected by the GP as possibly being in the last year of life. Analysis followed a grounded theory approach within a framework of interpretive thematic analysis. Results Data discussing 22 clinical cases revealed the difficulties experienced by GPs when assessing prognosis for older people with non-malignant conditions, despite their recognition of multiple mortality risk factors and high symptom burden. GPs did not appear to include the surprise question within their usual practice and expressed concerns regarding its use to facilitate discussion of advance care plans. These concerns highlighted the subjective nature of the surprise question and potential barriers to conducting discussions of preferences for future care. Conclusions Greater understanding is needed as to the difficulties experienced by GPs when assessing prognosis in older people. We propose a thematic model which could support GPs by focusing assessment on the supportive and palliative care needs of older people nearing the end of life.

Service improvement using patient narratives: engaging with the issues.

In this paper, the authors reflect on data quality issues arising from a UK project that trained senior practitioners to undertake Discovery Interviews with older people and their relatives about their urgent care experiences. These reflections are used to explore the potential for qualitative research methods to inform the development of the Discovery Interview technique.

Creating an integrated vision by collocating health organisations: herding cats or a meeting of minds?

The Brisbane South Centre for Health Services Integration (BSCHSI) initiative used a collocation strategy to integrate local service delivery across three different health organisations. Physical collocation was combined with validated integration strategies to improve organisational operations among five different work teams involving 90 different individuals. Enhanced communication, increased knowledge of collocating groups, and the development of collaboration and partnerships were key positive outcomes.

Changing the way "we" view and talk about frailty...

This commentary discusses the perception of frailty by different key stakeholders-most notably older people. It considers the need to integrate predominantly medically driven understandings of frailty within a wider conceptual framework. This is imperative if the potential of frailty as a construct, around which the optimisation of health and well-being of older people can take place, is to be realised.

Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach

In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their respective contributions and building on existing ways of working within which practice changes can be meaningfully integrated.

Researcher Emotions: A Way Into The Experiences of Frail Older People

This paper explores the importance of the researchers emotional experience in practice-near research. It details a journey towards positioning researcher emotions within a doctoral project exploring the everyday stories of older people deemed frail. Data from the experiences of interviewing and analysing the story of one couple are used to exemplify the emergent method. The method combines the Biographic Narrative Interpretive Method with the psychoanalytically informed Tavistock Observation Method. The paper details the utilisation of the method and the frame it gives the researcher to move beyond the purely text based, cognitive responses of participant and researcher, to the less rational, and unspoken aspects of the research encounter. The paper argues that the emotional experiences of the researcher as well as the participant are important data in understanding the experience of ‘being frail’. However, there is the need for an over-arching theoretical framework to give validity to these emotional processes. It argues that psychoanalytical approaches, which emphasise the quality of the emotions experienced and the internal psychological processes which mediate social experience, are helpful in underpinning both methodology and methods of practice-near research.

End of life care for people with dementia: an intervention to promote collaborative working between care home staff and healthcare practitioners

Background In England most care homes have no on-site clinician and rely on primary healthcare for end-of-life (EOL) support. The Evidem EOL study focused on end-of-life care for elders with dementia in care homes. Phase 1 found high levels of uncertainty among care home and primary healthcare staff around anticipating and supporting residents dying with or from dementia. This paper presents the piloting of a modified appreciative inquiry (AI) approach within Evidem EOL Phase 2 to facilitate end-of-life care for people with dementia in care homes. Methods A modified AI approach (a strength-based change management tool) was implemented in three purposively sampled care homes over 6 months (January–July 2011). A self-selected team comprising care home staff, a general practitioner and a district nurse from each care home participated in the modified AI intervention: (3 one-hour AI meetings and on-going researcher support.) Through this intervention the teams developed and implemented context specific, participant driven strategies to support EOL care for people with dementia. Results While evaluation is on-going, preliminary findings from thematic analysis of interviews with participants and collected data on use of emergency/acute services reveal: (1) High acceptance of the intervention, creating rapid engagement between participants who did not have a history of working together (2) Greater understanding and appreciation of respective roles and increased collaboration within the team (3) Improved EOL Care evidenced by increased advanced care planning; reduced number of emergency call outs and hospital admissions; increased staff confidence in talking to residents and family about end-of-life issues and wishes. Discussion Long-term sustainability of the intervention remains to be tested. However preliminary findings suggest modified AI is an effective tool to promote integrated working between care home and health services and to improve EOL care for people with dementia in care homes.

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals:

Background: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. Aim: To explore palliative care stakeholders’ views on what makes a patient more or less complex and insights on capturing complexity at patient-level. Design: In-depth qualitative interviews, analysed using Framework analysis. Participants/setting: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). Results: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services’ respond to needs and societal perspectives on care. ‘Pre-existing’, ‘cumulative’ and ‘invisible’ complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner’s Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Conclusion: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.